Monday Memories: Anna's Transplant!

Monday Memories: Did I ever tell you about In honor of Anna's 4 year transplant anniversary today: The story of Anna's transplant. Continued from Last Week We had a lot of up and downs during Anna's PICU stay. It was one step forward and two steps back. Once Anna's swelling went down, she looked terrible. Now, her eyes were sunken in, and her color was no longer yellow, it was orange. Her bili rubin was high at 26. That day that I walked in to see her, instead of being swollen, which I was having a hard time dealing with in the first place, she looked even more sick with the fluid off of her. There is a lot that goes into being in the PICU. Anna had her fair share of blood transfusions, respiratory therapists, CT scans, ultrasound, x-rays, tube adjusting, etc. There were a lot of lines that went in and came out. There were times that Anna's heart rate dropped dangerously low. A few close calls. I spent a lot of time singing to Anna, holding her hand, reading to her. Lots of conversations with doctors. I was there everyday as early as I could get there in the morning so that I wouldn't miss rounds, and usually stayed a few hours past nurse changes. If we happened to get a new nurse, I would want to stay to get to know her before leaving. I always had my cell phone close to me when I would not be in the hospital, and still called the hospital a few times when I wasn't there to make sure Anna was doing ok. I was always worried that something would happen while I was not there. I hated not being able to sleep in her room with her. I always felt bad leaving her, nervous. I made sure they knew to call me no matter what, no matter the time. Sometimes I wondered if maybe I should just stay up all night in the PICU with Anna, but I only did one night, and that was hard. This stay was wearing on me. Jason had to continue to work, and I was there all day on my own. I would get a visit here and there from friends, and family. It had to be hard for people to visit when it was such a stressful, uncertain and sad time for everyone. People didn't know what to say to me. Once in a while I would get a visitor that would offer to get lunch with me. I always appreciated that. I didn't like to eat in the cafeteria by myself, and you can't bring food into the PICU with you. I got Jason's mom to give updates because I was so warn down. It was hard to get calls, and try to explain the situation to people over and over again. On Valentines day our favorite PICU nurse decorated Anna's crib with hearts cut out from red and pink construction paper! I hadn't realized that it was Valentines day until I walked into Anna's room. She also had two new beanie babies by her side. She was always covered with her blankie that had a guardian angel medallion pined to it with a gold safety pin that we got as a gift for her during this stay (she still loves her blankie to this day.) Monday after Valentines day, I was tested to be Anna's donor. I had an appointment at Northwestern Memorial Hospital. I couldn't bare to have Anna alone that day, so I asked Jason's mom to stay with her while I was gone. I took a shuttle from Children's to Northwestern. They actually dropped me off at the University. I had no idea where I was. Luckily, I knew a student on the bus that happened to work in the liver unit at the time Anna was in with cholangitis. We talked about everything that happened with Anna since then on the way. When we got off the bus she pointed me in the right direction. There are a few building for the hospital, and they are not connected. This hospital is HUGE! After asking many people where to go, I found where I was supposed to be. I first met with the nurse practitioner, Lori. She was great! I had a regular physical exam, was asked a lot of questions. I had blood drawn. I met with a psychiatrist. They need to make sure you are not being pressured into doing this, and that your mental status about the whole situation is ok. The GI doctor let me know that I could die from this surgery. Well, you could die from any surgery. I knew this wasn't a minor thing, but I was ready to do what it took for Anna get a liver when she needed it. I knew I was putting myself at risk. I was ready. I also had a CT or an MRI (I don't remember which one it was). All the other testing had to be done the next day. There was a lot that went into the tests, it couldn't be done in one day. We didn't get an answer right away, and that drove us nuts. I believe it took a few days for a definite answer. The day I was told that I would get a phone call, I was a nervous wreck. I sat by the phone all day, didn't get up for coffee, food, or a bathroom break. I believe Jason was with me that day. It killed him that he had to be work through most of this. I can't imagine having to work all day, knowing that your baby is so sick. He had to work. There was no way he could loose his job, and he knew that after the transplant, he would need to take a lot of time off to care for the both of us. But, he was there that day, and I was glad. Every time the phone rang my heart would race. When we finally got the call, I remember I could barley say hello. It was Lori from Northwestern. I was a match! She asked me again, "are you sure you want to do this?" I said "yes, without doubt!" Jason knew as I was on the phone, he could see it in my face. It was a relief, and it was scary at the same time. To know that Anna was going to have such a surgery was scary. To know that Anna was going to get her liver, that we had it lined up for her when she was ready, was the biggest relief to us. Jason was worried for the both of us, but we were all ready. After I got the call, Anna's doctors came in. They knew already. They too, made sure that I was ok with all of this. They wanted to schedule the transplant for April 3rd. They wanted to give Anna time to fight off the infection that was running through her little body, or the transplant would be too risky. Although, if things got worse with her condition they warned me that it could be her only chance, and it would be done on an emergent case. This was scary for us. To think that things were that bad, and if they had to do an emergency surgery, that would be even more risky. Anna had more up and downs, and they kept pushing her transplant up and up. Everyone was praying for Anna. One day, she started waking up a little here and there. Then, one day, she was back. She would smile through her breathing tube. She reached for me. Then, she started to breath over her vent. It was like a miracle. Everyone, including her doctors, were shocked. Her breathing tube was pulled on the 27th of February. Now that she was doing so much better, they didn't want to take any chances. Anna's transplant was scheduled for March 6th! They bumped it up, and it was because she was doing well, not because it was emergent! This was great! She was put on oxygen, and moved to the 6th floor the next day. The first two days after leaving the PICU were the hardest. Anna was having withdrawals from her sedation medications, and she was crying constantly, for two days straight! I was crying right along with her. All I could do was hold her and try to comfort her. Try to get her to rest. There were a couple times that I was able to get her to sleep for a little while. There were also a couple times that I needed to leave her with someone else. It was so emotionally draining to see your child like that. Although, as soon as I would leave I felt bad, and would come back right away after grabbing a snickers bar, or a bottle of pop, or a bathroom break. After those two hard days, Anna became herself again. We spent some nice quality time together before our day came. I was especially glad to sleep in the same room as Anna once again, to not have to leave her every night. Here are some pictures of Anna during this time. I never felt up to it, to take pictures of her in the PICU. It seemed weird to me to take pictures. Jason's parents were the only ones to take pictures of Anna during her hospital stays. Now, I regret not having more pictures, but I am very thankful for the ones that we do have. These are from a visit from when Jason's parents came with Mary to finally see her baby sister. During her time in the PICU, we didn't let her visit but one time, and only for a short while. I was to leave for the hospital early the morning of transplant day. Jason spent the night with us in Anna's hospital room. Neither of us really slept. I was worried for Anna. I hated the fact that I couldn't be there to see her off to surgery. I wouldn't know what was going on, if everything was ok with her. I was worried for Jason. It was going to be hard for him to have the both of us in surgery at the same time, having to travel back and forth that day. Jason came with me to the hospital. I gave Anna so many kissed and hugs before leaving. That was one of the hardest things to do. Saying goodbye. When I finally worked up the courage to leave, the nurses on the floor were so supportive. They all hugged me, and told me what a great thing I was doing for Anna. That made me feel good. It was still dark when we went out to the shuttle that was to take us to Northwestern. As we pulled up to the building, I started to get nervous. We got to pre-op, and I got into my gown, got an IV, and epidural. The rest would be done after they put me out. We met with my surgeon, Dr. Abecassis. He asked me, once again, before being wheeled down to surgery, if I was sure. I was so sure. I hugged and kissed Jason goodbye, told him to take care of Anna. "Give her kisses from me when you get back." He promised to be back when I woke up. Obviously, I wasn't there for the rest. Jason and I have talked about the experience many times. I know that after I was wheeled in, he went right back to Children's. My surgery was going to start right away, and Dr. Superina (Anna's surgeon) was there to make sure of my liver, to help prepare it for Anna. They took Anna down at about 11 am to prep her for her surgery. Mine was done at around 1:30 in the afternoon. Jason didn't get all the updates that he was promised, so he was not sure what time my liver got there, or what time Anna's started. They called when I was in recovery, so Jason came to see me. I slightly remember this visit. I remember Jason calling me his hero. That, I can remember. I was very out of it, he told me, but I did ask about Anna. She was still in surgery at that time. I told Jason to go back there, I would be fine here on my own, Anna needed him there with her. Anna was done at around 8:00 in the evening. When she was done, both surgeons came out to talk with Jason. They let him know that everything went very well. Anna's new liver stated producing bile right away! Her old liver was horrible, very hard and diseased. This new liver, although a little large, looked great! Of course the first 24 hours were critical, but they were very optimistic! When I heard the news I was so very relieved. I got phone call from Jason after he talked to the doctors. Oh, What a relief! Jason came to be with me for a little while that night. I was in so much pain, and so medicated that a lot of this is a blur to me. I do, remember the calm that came over me when I heard that Anna was doing well, and to see that look in Jason's eyes. Links to other Monday Memories (If you participate, leave your link in the comments and I'll post it below) Shelli Kimmy Candace Yellow Rose Rowan Libra Girl Mama Kellys Musings

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Things that make you go Mmmm.....

This evening I was in the kitchen doing the dishes while the kids are were in the living room. Anna had an unopened sucker sitting on the coffee table. I reminded her earlier to not leave it lying around and to put it away until after dinner. Maybe she thought she might forget about it? Who knows, but that sucker just had to sit there and wait for her! Anna has her own reasoning for doing the things she does. Anyway, silence breaks. I turn off the water to listen. Every mother knows that silence isn't necessarily a good thing. All of the sudden I hear Alexandria humming Mmmmm, very loudly, and with a lot of passion. I walked into the living to find Alexandria indulging in Anna's heart shaped sucker that she received from one of her classmates at school on Valentines day. She must have unwrapped the sucker herself because nobody other than me, was aware that Alexandria existed at that moment. Anna was in her bedroom, and Mary was reading on the couch. She was loving every lick of that sucker. I didn't have the heart to take it away from her. It didn't' matter that she was making a flaming red, baby drool mess. Anna didn't even mind when I called her out of her room to take a look. I thought for sure that Anna would go ballistic! We all had a good laugh at Alexandria's first real taste of supper sweet candy! She Mmmmed her way through that whole darn thing!

And while I am on the subject of cute kid things...This one made me laugh too!
Jason has a pair of Michael Jordan shoes. As he was putting them on the other day and Anna got very happy. Anna is always happy when he wears those shoes. The reason is because it's one pair of shoes and they are actually two different colors. I mean, one is red, with white trim, and the other the exact opposite, and he purchased them that way! Anna is always up to wearing the most funky, fun things. She can't just wear plain socks, they have to be bright, or have some kind of design on them. Like Christmas socks in the summer time. So, Jason went into detail, and tells her that they were Michael Jordan's shoes, and what a great basketball player he is, blah, blah, blah! (Jason is very passionate when it comes to sports) After he is done telling Michael Jordan's life story;) Anna asks him, very seriously, "So, Michael Jordan gave YOU his shoes?"

My Monday Memories

Monday Memories: Did I ever tell you about When Anna was admitted to the Pediatric Intensive Care Unit Continued from last week.(actually, two weeks ago!) I brought Anna early in the morning, on February 6th, to Children's Memorial Hospital. After her being very irritable all night, neither of us got any sleep. Our home health care nurse was supposed to come, but I didn't even think about that until we got to the hospital. I woke Jason up as I was leaving. I had to tell him that we were off to the hospital, that I thought there was something more going on with Anna. I think it was still dark by the time we left. Jason had to leave early that morning too, to go to a meeting for work, but he would bring Mary with him. I don't think either of us thought this would be anything more than an ER visit, maybe an over night thing. Since Anna still had a few days left for her IV antibiotics I had started her dose that was due at this time right before we left, figuring we would arrive just as it was done infusing. We arrived at Children's in the ER, and got a bed right away. They flushed her line, and cleaned the area since that was what our nurse was going to do when she came. We saw some doctors, but didn't' get a room until Anna's doctors came in to tell us that they thought her cholangitis was recurring, and she was to be admitted to start some stronger meds. Dr. Emerick described this as we needed a bigger hose to fight the fire. I didn't call Jason until we got a bed on the liver floor. I was very upset at this point. I had noticed that Anna's breathing was labored, and we were having trouble getting a doctor in our room since they were already on their rounds. I knew that something wasn't right about the way she was breathing. Jason asked me to calm down, we were in the hospital so she will be looked after. I got the head nurse in the room and she got the doctor for me. I don't even remember his name, but he was working with the liver team at the time. I was holding Anna, and he took one look at her and walked out. I thought he was being rude, but he came back with Dr. Emerick, who agreed that they needed someone from the PICU. At this point I was hysterical ( and am now just thinking of the way I felt at the time), and Dr. Emerick (who has the best bedside manner, ever) tried to explain to me that Anna would probably need to be sent down to the PICU for closer observation. I called Jason and told him what was going on. I don't know how he even understood what I was saying. Looking at my yellow baby having trouble breathing with her belly so swollen that her belly button was sticking out the way that a pregnant woman's would, knowing that she needed intensive care, I was very upset. And to make matters worse, as I was talking to Jason on the phone, blood started pouring out of Anna's picc line. At first I had no idea where this blood was coming from. I asked Jason to get here as fast as possible, hung up with him and called the nurse in. I don't remember why her line was bleeding like that. I started to defend myself by telling them that the last person to take care of her line was the staff down in the ER. They weren't trying to blame me, but at that the time I was wanting to point blame at someone. The nurse fixed the problem (I still have no idea what went wrong with that) and the PICU team came up to get Anna. I followed Anna in her bed, behind the staff, feeling like a lost puppy. I was covered in blood. They were still trying to get me some scrubs. They were working fast with Anna once we made it to her room, and I couldn't see past them. I was still waiting outside of the room. Jason arrived. He left work after we hung up earlier, right away. I don't know what he did with Mary, but she wasn't there and I was glad because she would have freaked out. Jason looked at me with horror. Like, why are we here? What is going on? Why are you covered in blood? Soon after Jason arrived, they came out of the room and explained to us that Anna needed help breathing, and they needed to intubate her. We couldn't believe this was happening now. Of course we signed the consent. We were kicked out during the intubation, into the waiting area. They finally got scrubs for me, so I went in the bathroom to change. I just threw my blood stained clothes is the garbage. When we were called back into the room everything was done. Anna was laying peacefully in her bed, we met her nurse who explained some things to us like how Anna had to be sedated, and the many pumps and lines. I can't begin to explain how this felt. Everything happened so fast, we had so many questions and we had so much thrown at us all at once. There we were, sitting in the PICU, looking at each other in disbelief. Jason had some pictures of Anna with him that our home health nurse had with her that morning. That's when I remembered, that I hadn't remembered she was coming that day. She had pictures of Anna, and she gave them to Jason as he was just leaving to go to work. I hung the pictures of Anna up on her bed. I remember showing the nurse the pictures so that she knew what Anna looked like without the tube down her throat, and taped to her mouth. I honestly don't remember that whole rest of the day. I know we had many discussions with doctors, and nurses and a social workers. Jason left to go home later that night to get me some stuff from home, and I went to his parents house to sleep. It was nice that they lived close to the hospital so that I didn't have to worry about the morning traffic from the suburbs, and didn't have to sleep in the waiting room, or stay up all night in the PICU. Jason got back to his parents house very late. [Wait, now I remember, Jason's dad dropped Jason's mom off at my house to take care of Mary while Jason was at work.] It was very late at that point, and I couldn't sleep. I was up in the living room "watching" TV. He came back with a pair of cell phones. He thought now, at this point, we would need them. He was right. I needed to be able to reach him in case anything more drastic were to happen with Anna's condition, and if I weren't there, and the doctors needed to call me. We got to the hospital very early the next morning. I thought we walked into the wrong room. Anna was very swollen. All over the place. This scarred the crap out of us. We had no idea why, or what was going on there. It had something to do with the sedation medication it think. I was crying, she didn't look like the same baby. Not our baby. We talked to the doctors at rounds that morning, and mentioned something about putting Anna on the transplant list. I don't remember if they were asking our permission, or if they had already done it. Later that day we were told she was on the list, but not status 1 because of her unstable condition. Maybe it was that she was on the inactive list. [I have forgotten a lot of this stuff so forgive me for all of my "I can't remember" stuff] Then someone said something about maybe considering looking into living donor transplantation. I remember when we were first told that they had a good living donation program. It was way before all of this. Maybe after her Kasai? I remember thinking that there was no way I would want to be tested first. I hoped that they would ask Jason to be tested, and that he would be a perfect match. I am embarrassed about thinking that now, but it's the truth. I hoped that it wouldn't be me. As soon as I heard them mention that now, after Anna being in the PICU for only 1 day, I had this feeling come over me. I knew it would be me, I was ready and very willing. I was at peace with it, I didn't like to see my baby in this condition. I was ready to do whatever it would take to make her better. I knew my blood type, and I asked the nurse what Anna's was. The same. That was it, It would be me. I just knew it! Of course, it wasn't that easy, but it gave us hope. Anna was in no condition for a transplant right then. Things needed to be set up between Children's and Northwestern (they don't do living donation in Chicago at the same hospitals) We learned that Anna was septic, the cholangitis infection had spread through her blood stream. We had to put this wild fire out, with a huge hose. Next week: The month leading up to Anna's transplant. I hope to have her transplant story up by her 4 year anniversary. March 6th. Links to other Monday Memories (If you participate, leave your link in the comments and I'll post it below) Shelli

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I know, it's been too long!

Geez, I can't believe that I have gone this long without updating! Things have been pretty crazy around here. All three of my girls have been rotating sickness. It started a few weeks ago with Anna having bronchitis, and Alexandria having fevers to be later diagnosed with an ear infection. Anna sounded as if she was going to cough up a lung, and Alexandria was understandably crabby. I had a lot of sleepless nights since then, but things a starting to calm down.

Jason started a new job last week also. He finally got fed up with his previous job. He wasn't going to quit before he found a new job, but with what happened the day he put in his 2 weeks notice, I was right there a long with him.

One week after I took the girls to the pediatrician Alex was up all night coughing. She probably caught what Anna had. When we woke up the morning (Valentines day come to think of it) after my very restless night with Alex, she spiked a fever of 102. She didn't look well, tired of course because she was up all night coughing. Still, you could tell in her eyes that she wasn't well. Her chest was rattling, and she was coughing up a lot of stuff, very clingy to me, I couldn't put her down for a second. Before I got Mary to school, I told Jason what was going on with Alex and we both agreed that I needed to bring her in ASAP. Jason was supposed to go to work, and Mary still had to get to school, Anna had her ballet class and school to go to also that day. Jason decided that he had better call into work so that he could take care of the other girls while I took Alex in.

He called in 2 hours before he was supposed to be there. They gave him shit about it. Jason works in sales, and he was supposed to be at the store that he managed by himself that day. They said they didn't have anyone to cover for him, so he had to come in. I didn't know how long I would be at the hospital for (my pediatrician wasn't in that day, so I had to take her to the ER) They questioned him, like he was lying about his daughter being sick! Unbelievable! He ended up going in, I put off taking Alexandria to the doctor until the girls were done with what they had to do that day. I couldn't keep Anna out of ballet, she already had missed three classes because of being sick. Also with it being valentines day, and Anna working so hard to write her name on 18 valentines cards for her classmates, I couldn't keep her out of school either. She only goes for two days a week, and loves every minute of it. I brought Alexandria to grandmas, were she slept for 3 hours, so that was good and I didn't have to drag her around all day. The snap she took was good for her, she woke up feeling a Little better and drank a whole 8 oz bottle.

During all of this, Jason had some serious conversations with his boss at work. His boss said that if it were his daughter, and it was emergent, he wouldn't have gone to work or waited around for someone to give him an OK. So, he tells Jason that he had to come in, then asks him why he bothered?! He was still questioning Jason. That's when Jason turned in his two week notice. Mind you, Jason hasn't been in a good position, or on good terms with his boss there for a while now to begin with. This put him over the edge. What, you can't have a family when you work for this place?

I was worried because if he didn't get a job in those two weeks it was going to hurt us financially. It ended up that called an old boss that he worked for when everything went down with Anna, and they welcomed him back right away. Jason started that job the day after he put in his notice. It's not a job that he wanted, but it's better than the one he just left (money wise) and it will have to do for a while. This is where Jason worked when Anna was sick, and they were very good, great even, about the time that Jason needed off.

So, that day when I finally got Alexandria to the doctor ( I ended up taking her to an immediate care center). They took a chest x-ray and that came out clear. That surprised me because of the way she was breathing. When the doctor looked in her throat, it made her gag, and she coughed up a nice big wad of mucus. After that she sounded so much better. She did have bronchitis, a sinus infection, and an infection in the ear that wasn't infected when we took her in the week before. He said that the ear looked like it was about to perforate. Yikes, no wonder she felt the way she did. Poor baby. He put her on more antibiotics, and gave us Albuterol inhaler. She had a better nights sleep that night, but woke up with a diaper blow out. Being on two antibiotics at once, along with a decongestant and Tylenol for her fever, she had stomach upset. So, the next five days we were dealing with that. Then Mary cough the cough, along with a fever. Then Anna started to have unexplained fevers for four days in a row.

Anyway, like I said it has been crazy here for they are progressively feeling better now. Thank God I never got anything, it was hard enough trying to take care of three girls simultaneously and sometimes all at once. I feel like we have been in the doctors office more than home. Now, I have spent the past few days disinfecting my house. Hopefully we're done with all of this.

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We are coming up on Anna's 4 year transplant anniversary soon! I can't believe four years have gone by already. Anna continues to amaze us everyday. I'm not sure how we will celebrate. I think we'll let Anna pick a restaurant to eat at. She has been asking for Rollerblades, so I think we'll just might have to buy some for her! Along with elbow pads, knee pads, and a helmet of course. I want to give her the world, but I think roller blades will have to do for now. Lately she has been asking to go back to Disney World, and has asked me, "wouldn't it be cool to live at Disney world!" I tried telling her that if we lived there, it wouldn't be as exciting anymore. Yeah right, try telling that to a four year old. Then she told me that maybe Alexandria will be special like her, and be able to make a wish, and she would wish for Disney World too, because she (Anna) would tell her how much fun it was. We had a long conversation about that too.

We'll be going to Children's for transplant clinic, blood work, and her yearly ultrasound. If everything look good we will be going for yearly visits then, but of course still go every three months for blood work. I would also like to talk to them about her immune suppresant weaning and how they feel about how that is going. Obviously, I now it's going good so far, so I wonder if they might wean her down a little more that day! Maybe, Maybe!!!!

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Last matter of business: Anna's friend Annika.

I have written about Annika in many of my posts, but for those of you who don't know her story I will write a brief summary (or get her full story her). Annika is also a liver patient at Children's memorial hospital. She is a year older than Anna, and has already had two Liver Transplants. She has had many complications post transplant including major bleeds. She has spent this past thanksgiving and Christmas in the hospital (in the PICU on Christmas day, unconscious) Only just recently she was able to go home, but the doctors have warned her parents that this will only be short lived. She is in need of another transplant, and to make matters worse her insurance company has cut her off for the year, and it is only February! They are having to fund raise now so that they can pay Annika's many medical bills. If you would like to help by visiting her site here, or Annika's Insurance policy, or her COTA fund it would be more than appreciated. I am going to put up a few buttons to on my page permanently, linked to these sites.

We have met Annika and her family on a few occasions, and I can't say enough great things about them. They don't deserve what they are going through right now.

Here are a couple pictures of Annika and Anna:

September, 2005. Visiting Annika in the hopspital.


Annika, Mary, and Anna two summers ago at the zoo.

Monday Memories: Anna and Cholangitis

Did I ever tell you about Anna's first bout of Cholangitis

Continued from 2 weeks ago (sorry for the delay, I had to take care of my sick girls all week):

We were very lucky to be able to have Anna home right before the holidays. We sure had a lot to be thankful for come thanksgiving time. Anna came home a few days before Thanksgiving day. She was doing great. I was already getting used to giving her all of her medications, and she took them all so well! We celebrated Thanksgiving with Jason's parents only that year. I was a little weird about germs, and we have a big family on Jason's side. Lots of Italians equals lots of kisses and baby passing. But it was nice.

Our first checkup went good. Dr. Superina seemed pleased with Anna's progress! For a while after her Kasai she was a peachy color! We continued to go for regular checkups at Children's.

Christmas time came, and Anna continued to do well. We all thought we had the worst behind us, convinced that Anna would be in that small percentage of Children living with BA into their Adult years.

It was probably the week before Christmas when I noticed that Anna was getting her yellow color back. When we went for liver clinic they told us that her bili rubin could go up and down for a while. I was disappointed because she was looking so good for a little while, and I didn't want to ever see that color on her again. But, she was still doing well, her belly wasn't too bloated and she seemed to feel good. It wasn't until after New years that Anna started to act as though she didn't feel well. I would be up with her all night, and she would be crabby throughout the day. I took her to clinic, and they still didn't seem too concerned. At this point we were going for more frequent lab draws. One night I couldn't take it anymore. She was up all night, every night, and she was getting more crabby during the day. It took me until she was inconsolably to take her in again. Not wanting to go by myself with Mary and Anna with the way Anna was acting, I went to pick up my mother in law to come with us. I needed that support. It was later in the evening by the time we got to Children's ER. We got a bed in the ER right away. I was shocked. With this being the first time in the ER at Children's, there were so many people waiting, but we got seen right away. Other people in the waiting area were not happy. I heard them ask why we got seen right away when their child was _____(fill in the blank) [Skipping ahead, this is how it always would be when we go to the ER in Children's and we have gotten many evil looks from parents. I swear, if I ever had to the ER and people got seen before me, or my "not so sick" child I wouldn't blink an eye. There are reasons for this] We were seen again by many doctors again. This was the first time that we would meet Dave. Dave was the new Liver nurse/practitioner working with the liver team. He was kind, and took a liking to Anna right away. Well, who wouldn't. We got an IV, blood work and other stuff done I'm sure. Thinking back now, I was fairly calm. A lot more calm than I was the first time we walked into that hospital. The staff was great with Mary, got her some snacks, and put on a movie for her to watch. When we learned that Anna had to be admitted for a biopsy, Jason came when he got off work to pick up Mary and his mom.

I don't remember how it all went down after that, but the biopsy was probably done the next day, followed by having to wait for the results. It turned out that she had Cholangitis, an infection in the liver. We were told that this is a sign that the Kasai is working. That since there is a way for the bile to come out, that means there is a way for bacteria to come in. But, I wasn't prepared for what we were about to hear. Anna would need a Picc line. This is a more long term line than a regular IV. It could stay in for months. She would go home on antibiotics that I was to administer, for a four week course. I would have to learn how to care for the picc line, and we would need to have a home health care nurse come to clean the picc line area, and draw blood. OMG!!!! Are you kidding me. I'm not a nurse. I didn't think I would have to do all this. I thought that was on all of these people here. But, we wouldn't' want to stay here for four weeks. At first I thought, no way, I couldn't handle that, but after learning some from the nurses about how to be sterile and how to flush the line I became more comfortable. I had to have a positive, I can do this attitude, or I wouldn't be able to do it.

Anna stayed for a week between getting the biopsy done, waiting or the results, and getting the picc line in. When we got home it seemed like we were doing something wrong. I guess it just felt weird to bring your baby home with something still attached? But I was confident. I knew I could do this. We were scheduled to have our first box of all of the medical supplies that we would need, delivered first thing in the morning. Our home health care nurse was to be there early too. They sent us home with enough supplies to last us through the night. I was feeling confident, I knew I could do this. The first antibiotic that I gave to Anna was done soon after we got home. She was on two different strong antibiotics, Gentamicin and Piperacillin. I infused it, by hand and flushed her line like I was supposed to. I don't know what happened, but the next dose, due later that night, wouldn't go through. I was taught to never force it, so we headed to the ER. Not being home for even 4 hours, we was headed back. I went all the way back to Children's because I didn't feel that we would receive the same care at our local emergency room. Since it was practically in the middle of the night, I flew. I was worried because she was supposed to be having that antibiotic right then instead of heading to the hospital. I was so upset with myself. Talk about a confidence buster...Did I flush her line with Saline instead of Heparin? Again, we got a bed right away in the ER, and they were able to flush her line out. They had to work at it, looked like I could have done that at home.... We got back home only an couple hours before our nurse go there, and just in time for our huge package of medicines, and medical supplies. Actually, I think it was two boxes. We also got a pump for one of her medications that took a half hour or so to infuse. Man, I was tired, and talk about overwhelming.

Our lovely nurse came just in time. She gave me some more information on how to care for Anna with her picc line, and answered many questions that we had. It was a tiring schedule of 7 infusions per day, and having to wake up in the middle of the night to administer them. After a few days, it became easier though. Like clock work. We didn't have anymore problems with her line getting clogged. We managed to stay away from the hospital for 3 weeks while she was getting her antibiotics and blood work at home. She never seemed to get better, and it seemed as though her jaundice got worse by the day. I did what I was supposed to do. I used to blame myself, thinking maybe I wasn't sterile enough, or I didn't infuse her antibiotics right.

Anna was admitted to the hospital February 6th for recurring cholangitis, and after only 2 hours on the floor, she was admitted to the PICU for being Septic. More on that next week.



Here is a picture taken by Anna's home health care nurse:


Anna sporting her new Mariners jersey sent by Aunt Jessie in Seattle, along with her new picc line.


Next week: Anna is admitted to the PICU, and put on the transplant list.

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No Memory

***Update on bottom half***
***Update again on bottom, bottom half***

Ok, sorry guys. I know I was committed to doing Monday Memories every Monday, but I don't have one this week. I had been writing my story little by little during the week, and even having it up by Sunday night, but haven't had that chance this past week. I will try later to maybe have a late Monday, or an early Tuesday memory. Maybe I will skip it all together this week. We'll see how today goes.

For the past few nights I have been up with a sick baby. Alexandria has had a fever on and off for two days. Of course this morning she is great, but I will take her in anyway. It got pretty high so I don't want to take any chances. Also, for a few days Anna has had a cough that is getting worse by the hour. It is starting to affect her sleep now. She woke up last night a few times wanting some cough medicine, and eventually crawled into bed with us last night. I didn't get much sleep, Anna usually takes up the whole bed laying sideways and kicking on us. This morning she isn't able to eat because she is coughing so much. I have been trying to get a hold of our pediatricians office so that I can get both girls in. They don't pick up the phone anymore, they have voice mail now, but if I can't get a hold of them with in the hour, I will call his answering service and have him paged. Wish me luck! I WILL get in.....I promise.

***************************************

Updated from this morning

Ok, back from the doctor. I took Anna's temperature, and it came back at 100.5. I know that this is not very high, but it gave me reason for being more concerned than if it were just a cough. So, I had the doctor paged and he got back to me right away. He asked me to bring them in ASAP because he was booked today. I love our doctor, he put us in a room right away so that the kids weren't exposed to the other sick kids in the waiting room. Turns our Alexandria has an ear infection, so that explains the fevers. Anna has Bronchitis. He gave her a nebulizer treatment. Now both of them are on antibiotics.

I am trying to phone the doctor again now because when I got home I researched bronchitis a little more. I know Mary and Anna had it last year, and it lasted a while but I don't remember them having a fever from it. The doctor said it was contagious, so wouldn't that mean that it would be a viral infection? Aren't they not supposed to give antibiotics for a viral infection? Aren't they only given for a Bacterial infection? Bronchitis can be viral or Bacterial, and a bacterial infection isn't contagious...right? Ok, I am a little confused. I know this stuff!!! Why can't I think straight right now?!

Now Anna has a temperature of 101.5! A degree higher than this morning. Hope the doctor calls back soon!

******************************************

Updated from yesterday

Everything is fine. I always get a little nervous when Anna has a fever that high. I overreacted. Doctor told me that it could be Bacterial, or Viral. He said better to treat her with antibiotics either way when it is Bronchitis. Antibiotics will treat a Bronchial infection, even if it is viral. I just kept thinking that you don't treat a cold with antibiotics, and that's viral. I guess I needed a refresher course.

He told me to call him in the morning if her fever didn't break, and then he would run further tests such as a chest x-ray to rule out pneumonia if she still had a high fever. Before she went to bed her fever went down to 101.3. I thought it should have gone down more after giving her tylenol. I'm such a worry wart. Anna woke up around three in the morning wanting carrots with ranch dressing. Silly girl. She was bright and chipper, way different than yesterday (laying on the couch not eating or drinking) She was back to normal by the time we woke up to get Mary ready for school. No fever. Still coughing a lot, but no fever! Eating fine, drinking fine, being Anna! She was very angry that we kept her home from school and Ballet today though. She told us that she felt all the way better now, and she didn't want to miss what they were doing in school.

I'm getting this

Or am trying to. I came across this the other day. Since I have to renew my license plates this month, I will be getting a brand new set. These plates were thought up in honor of Walter Payton.

To learn more, click on the license plate.


Also, I found this article:

"Payton suffered from a rare liver condition--primary sclerosing cholangitis--but died from bile duct cancer, a side effect of the disease. There is no cure for PSC, but liver transplants often are successful; 75 percent of those with PSC have "a good quality of life after recovery" from a transplant, according to the American Liver Foundation.

Payton, who announced he needed a liver transplant in February, learned he had bile duct cancer in May but chose not to disclose it publicly. While PSC alone can be treated with a liver transplant, bile duct cancer precludes such treatment because the drugs used to help patients adjust to transplants weaken the body's ability to fight cancer. "

**********************************************

I'm not sure if I can change my plate number, but if I can I might try to get that personalized. (igvelfe) or something like that. I will try to come up with a few options in case that is already taken.

People ask me why I am so into this kind of stuff. Well duh. I know Anna got part of my liver, but still. What if I wasn't able to be her donor? Come on people. Whatever I can do to help promote organ donation awareness, I will do!

Feeling sad......Maybe a little guilty

Thankful Thursday: What Sarah is thankful for this week First off I want to let you know that this is my first Thankful Thursday. I haven't thought much about blogging lately. I have been busy with the kids as always. Yesterday I was feeling sorry for myself all day. I don't know why, but I have been in this crappy mood that I just can't shake. Jason hasn't been doing great at work, and as he is looking for another job we are getting far behind on a lot of our bills. He is getting discouraged because he has been turned down for a few "good" jobs. I know he feels as if he has let us down, and that is probably my fault that he feels this way. Because I grew up in a big house, I often comment on how I hate that the girls have grown up in an apartment. We have little space. Jason, on the other hand, has never lived in a house, his whole life! Maybe he wants it more than I do. He feels that he has let me down, and let the girls down. Late last night and this morning I was catching up on some blogs, and fellow Liver friends. I just learned that our local liver friend, Annika is bleeding again. She just got to go back home after being in the hospital since before Thanksgiving. Everything was looking good for her, then all of the sudden she spiked a high temperature and had to be admitted again. Then, another local liver friend, Natalie who is approaching her 1 year transplant anniversary, had to be admitted due to high biliruben. That is a huge red flag for liver/transplant patients. She also had been doing good. Just like that. Prayers for these kids, please. Both of them have had a bumpy road since their transplants. So, what the heck am I complaining for? I might not have everything that I want, but we are all healthy and we have each other. Anything could happen. Anna has been doing well yes, but anything can happen. Just like that. I hate that I have taken her for granted while I was feeling sorry for myself. How selfish of me. Why am I dwelling on the things we don't have? This is what I am thankful for this Thursday: Anna's health. My whole family's health. Jason. The sweetest, most beautiful little girls. A warm house. Food. All things that I take for grated. My life isn't so bad. We go through hard times, but with our love for each other, we get through. Links to other Thankful Thursdays (If you participate, leave your link in the comments and I'll post it below; or, you can post in the comments)

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Monday Memories: Anna's Kasai

Monday Memories: Did I ever tell you about Anna's Kasai Operation Continued from Last week: I didn't sleep very much that night. Jason got to the hospital early like he had promised. We waited all day for the results, hoping that we would know early. Still having hope of this all being a misunderstanding, or maybe something a little more simple and easy to fix. Neither of us wanted to leave the room for fear of missing the doctors, so we sat and waited and waited and waited some more. It wasn't until late afternoon when Dr. Alonso came to the room. I had just come back up from getting something to drink out of the vending machine in the cafeteria. They always come when your not there. Of course, they waited for me to come back before pulling us into the conference room. I remember following Dr. Alonso down the halls, feeling as though we were walking in slow motion. I know there were other liver team members who tagged along, but I only remember talking with Dr. Alonso. When we entered the room, the sun must have been setting, because it was blaring through the blinds. ( Gosh, I don't even remember this till now, writing is bringing back so many memories.) Sitting there, clenching my soda bottle tight, we heard the words Biliary Atresia, again. That was it, that's what it was. I don't know what she said after that. We were holding on to the hope of this being something else. It hit us, again, like a ton of bricks. Anna's Kasai was scheduled for Monday, November 12. We went back Anna's room and I looked at her with fear. Fear for her. We were told that we would be able to go home for the weekend since it was only Friday, so that's what we did. Any time you are allowed to go home, you want to take it. Even if it's only for a day or so. Hospitals are no fun. Our neighbors were also leaving at about the same time, wishing us good luck with Anna, and we wished her the same for her daughter. The mother looked at us knowingly. Our time at home that weekend was bitter sweet. Jason had to go to work Saturday, and we had to be admitted Sunday night for Anna's surgery early Monday morning. So, we only had one full day. We thought it would be best for Mary to remain with Jason's parents. I didn't know how to handle all of this, and we thought Mary would be worried. Kids can always sense when something is up. She was excited to be spending so much time with her grandparents anyway. Jason had to work Saturday while Anna and I spent some peaceful time together that day. I held her all day that day, took naps with her and got nothing done around the house. Jason's Aunt Mary made a surprise visit, she brought food ( feeding me made her feel like she was helping out, that's the Italian way ), and more information on BA for me she printed out from her computer (I didn't have a computer at the time). While I know she thought she was helping by cleaning my house, washing my dishes, bringing food and more crap for me to read, I just wanted her to leave. I was in no mood for company. Anna and I needed this time together, alone. The next thing I remember was handing Anna over to the nurse on the morning of the surgery. We didn't even meet her surgeon before the surgery, so I felt like I was handing her to a stranger. Well, I guess really we were. I didn't know anything about anybody that would be in there with her and to think of them working on her for hours was very sad to me. I guess you feel like, it's me handing her over, putting her life in other hands, not knowing these people and if anything goes wrong I would feel like it was my fault. It's hard to let other people just hold your new born, you know? The surgery took 7 hours. It was nerve wracking in the surgical waiting room. Again, we didn't want to leave but they told us we wouldn't hear anything until half way through, so we decided to get breakfast. We ran into Dr. Alonso in the cafeteria. She asked if Anna had gone to surgery yet, and reassured us that it would be fine, and that Dr. Superina was the best. We were angry for not having met the surgeon before hand. Why wouldn't they talk to the parents first? It all happened so fast, just like that. Not even one week since the diagnoses. Anna was only 2 days shy of 8 weeks old. Now she is going through an operation, with a surgeon we haven't met. It's scary how fast your life can change. After we ate, we stayed in the waiting room the whole rest of the time, besides the occasional bathroom break and phone call to Jason's parents. We saw families come and go. We watched the Proud Family over and over again. It must have been a marathon. Neither of us had the attention span to read a magazine. We just sat, and waited. We never heard anything half way through, and I am not sure why we never asked. Maybe I thought we'd be bothering them? I don't know, but it was scary. Maybe they didn't want to tell us bad news, or maybe they forgot about us sitting and waiting? That's what I thought. I don't think it was until an hour before we got to see her, when we heard that it was over, and they were just finishing up and would be bringing her to recovery. They would call us in when they got her settled in. They warned us about what we would see when we walked in to see Anna, but they could never really prepare you for that. We could barley see her, there were tubes all over the place. They had braces on her arms so that she wouldn't pull on anything. She didn't look the same, she was swollen. It was heart wrenching to see your baby like that. Anna stayed in recovery for another half hour or so before we got a room. There were no rooms available on 6 west anymore, so we had to go to stay the 5th floor, and stayed there until we were released from the hospital. I was upset, but I think maybe I was getting fed up with the whole hospital experience. We had to demand that they call the surgeon to come talk with us. We had many questions, and were shocked that we had to hunt him down. I guess we had this crazy idea that the surgeon should talk to the family! Looking back now, we over reacted. Dr. Superina is a great, don't get me wrong. That whole hospital is great, it just so happens that the little things got to us more then because they all happened at once. Between the bad experience in ultrasound, the waiting, not being able to meet with the surgeon before the surgery, and no updates during. Then we couldn't even stay on the floor that we should be on. We were not happy. He came in and talked to us no too long after he was paged. Not very much was said. We would have to wait to see if it would be successful. Once again, we wanted answers right then. We had this crazy idea that he would have a prognoses for Anna right away. We were naive yes, but how were we to know. Anna was in the hospital for 7 days following her Kasai. She did very well, and everyone was pleased with her progress. It was nice to be able to bring her home. Mary was happy to be home and able to go back to school. Jason went back to work. Anna was feeling good, and her jaundice was clearing up some. Things got back to "normal." Next week: Anna's first bout of Cholangitis Sorry for the photo Quality. Since I don't have a scanner, I have to take pictures of pictures. A pictures of Anna taken soon after coming home after her Kasai Mary, happy to have her baby sister back! Links to other Monday Memories (If you participate, leave your link in the comments and I'll post it below) Running 2ks Allison Shelli Rowan Snickerdoodles

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Thursday Thirteen: 13 New Things Baby Sister Alexandria Can Do

Thirteen Things about Alexandria 1. Say Anna (the best thing in Anna's mind!) 2. Claps her hands 3. Shakes her head no 4. Crawls faster than I have ever seen a baby crawl 5. Cruises along the furniture 6. Stands on her own for about 10 seconds at a time 7. Sorts shapes ( Blue circle in blue circle shaped hole) 8. Knows how to make us laugh 9. Therefore, makes everybody laugh 10. Says Mama, Da Da, Papa, Ba Ba, 11. Blows kisses 12. Says gaygee (doggy) geegee (kitty) 13. Crawls fast enough to get to gaygee and geegee's food bowls, put the food in her mouth while dumping over water bowls, all before Mommy could get to her, and laughs about it! Little stinker: Links to other Thursday Thirteens! 1. (leave your link in comments, I'll add you here!) Shelli Mama B The Color Purple

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Music

Thank you thank you Becca! After many days of trial and error, I was able to put some of my own music on this blog! I chose this song because it is one of Anna's favorite songs! I would sing this to her in the hospital, over and over again! She loved it, and still does. This version especially!

Let me know if you can hear it or not, maybe I am getting ahead of myself.

This version of "Somewhere Over The Rainbow", mixed with, "What A Wonderful World" is sung by Israel Kamakawiwo'ole.

Moday Memories: The Biopsy

Monday Memories: Did I ever tell you about Anna's admittance and Biopsy Continued from last week: I don't remember what time we finally arrived at the hospital that day. We actually still had a bit of light though, I remember seeing the sun setting as we approached the Hospital. The whole day went by in slow motion. I felt like I was living in a nightmare. When we walked into the hospital, I had no idea where we were supposed to be. Did they tell us where to go? We didn't have her room number or anything. "Are you being admitted?" the front desk lady asked. No turning back now, she sent us to the admitting office to fill out some papers, take our insurance, and put some bracelets on Anna and gave Jason and I our parents passes. That was it, we were a patient"s parents at Children's Memorial Hospital. Up to 6 west we went with all of our papers now. I still remember them saying, "follow the train tracks to elevator A and your going to the 6th floor." It didn't feel right that we were there. We went from being a happy carefree family with a perfect brand new edition, to this? This didn't happen to people like us. How are we going to deal with this, how much is this baby girl going to have to endure? We approached the nurses station with our papers, and then we were shown to our room. It was a double room towards the back of the unit, but it was just us at first. I was a little upset to think that we would have to share with another patient, this was hard enough to deal with, it would be nice to have some privacy. Well, at least for right now we were alone, I thought to myself. Alone my butt! There is no being alone in the hospital. I can't remember how many different people we saw that day, and we had a lot of questions for them. We were told Anna was scheduled for an ultrasound first thing in the morning, then we would meet with Dr. Alonso who would do the biopsy. After things quieted down a bit, Jason left for his parents house, but promised to come back first thing in the morning. Thank goodness, Jason's parents only lived 15 to 20 minutes North of the hospital at the time. If he tried to go home and drive into the city in the morning, it would have taken at least an hour and a half, if not more. Traffic into the city in the morning is always horrible. Jason got there the next morning before we headed down to ultrasound. The ultrasound took a while, it was very silent and uncomfortable in that room. I had been up all night and I remember wanting to crawl onto the bed with Anna and fall asleep. There was a bubbly fish lamp in there that Anna enjoyed watching. She was such a good girl! Usually two ultrasound tech's perform an ultrasound. I remember the first one looking for Anna's gallbladder, and not being able to find one. In between tech's, I remember Jason saying that maybe that was the problem. We had no idea that with Biliary Atresia the child doesn't usually have a gallbladder. We were looking for a way out, any other explanation than Biliary Atresia, because from what we have heard about it so far, it did not sound like a pleasant disease. The next tech came in, but wasn't in for as long as the first guy. Then we were done. We had to wait for transport and they needed the room, so they kicked us out. There we were, waiting in a hallway. After waiting for a good thirty minutes (yes, just for someone to show us back to our room. Like we couldn't walk up there ourselves), Anna's IV machine started to beep. Not knowing what was going on, we got scared. We didn't know why it was beeping, and no one could explain why. We tried to get someone to help us, they blew us off. They seemed too busy to want to deal with us. Jason got upset, and so did I. We demanded someone come get us, or for them to let us walk upstairs by ourselves. What did they think we would do? Steal our sick child out of the hospital? I don't remember what we ended up happening. I do remember that all it was, was that the IV machine battery was low, and needed to be plugged back into the wall, but how the hell were we supposed to know that. It sounded scary to us, and nobody down there knew what to do about it. When we got back to the floor, we meat with Dr. Alonso, who did the biopsy. They were able to do it right there at bedside, but Jason and I had to wait out in the hall. It was so quick, but the results wouldn't be in until the next day. More waiting, that is what being in the hospital was all about. I am patient, Jason is not. He hated sitting there waiting, so I told him to go on home and get some rest, "just make sure you come back early in the morning." I hated having talk to the doctors on my own. I always felt like I wouldn't understand what they said, but when it came time to relay the message to Jason I would forget. I wouldn't remember to write down questions. There was so much information to take in, we were so new to this it was very confusing. So, after we saw the docs for night rounds, Jason went back to his parents house. It was nice for Mary to be able to see him. I missed her so much already, but I needed to be there with Anna. We got neighbors that night. As much as I thought I would hate having neighbors, is as glad as I was right then to have them. I got to talk to the mother about our situation, and our uncertainties, and she told me about themselves. It was a little girl, about two years old. I don't remember what she was in for, but she had been in recovery for a surgery on her kidneys, and was able to move to the floor that night. Poor sweetheart had a ruff night. Although she had a crib, she slept with her mommy on the pull out chair. You could tell these parents were used to being in the hospital stays. That was going to be me, I thought. Always in and out of the hospital, this place was to be our second home. More knots in my stomach. I prayed to God that the biopsy would show all was well and Anna would be sent home with a clean bill of health. God, please help her, I prayed, heal her, make her better. Next week for Monday Memories: The results are in, and Anna's Kasai. Links to other Monday Memories (If you participate, leave your link in the comments and I'll post it below) Running 2ks Allison Shelli Rowan Snickerdoodles

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Happy Birthday Daddy!

Today is Jason's birthday, and just in time for it we got a nice huge snow fall! Jason loves the snow, I hate it. I went to Jewel last night and had to scrap off my car. It was snowing so hard that while only being in the store for 30 minutes, or less maybe, I had to scrap the snow off my car again! I am too lazy to get a really good picture outside, so I just took one out the doorway this morning.





It's too bad Jason has to work today, or he would probably take the girls out to play in this. That means I'll have to do it. Did I mention that I don't like snow? Later tonight we will celebrate Jason's birthday by going out to eat, then we will go to his parents house to eat cheesecake. Speaking of cheesecake, Mary had an eye doctor appointment yesterday. She has been complaining of blurring when she reads. We discovered that she is far sided, and she will need glasses for reading. Not a big deal except I will have to trust her to take them on and off all the time and not loose them. I told her we would buy a special case for her. She is happy to get glasses, as I was when I was young. I know that won't last, it comes to be a hassle. Maybe I should get Anna's vision checked as well. The whole side of my family, well most of them, wear glasses. Jason's mom and dad do, both have to wear bifocals. I wear glasses, Jason did, but hasn't since he lost his last pair. Ok got off the subject a little. So, what does this have to do with cheesecake? Anyway, since it took a while at the eye doctor I didn't bother to try to rush to get Mary back to school after lunch time, so I let her ditch the rest of the school day and we headed to Woodfeild mall to the cheesecake factory to get Jason a cheesecake for his birthday, his favorite! 45 dollars for a 10 inch fresh strawberry cheesecake! He's lucky we love him, Jason's parents and I split the bill. Mary and I went to lunch, and looked around in the mall for a little while. This place is huge, and I try to avoid going there too much because there is a lot of walking involved. I know, I sound lazy. You shouldn't go to the mall without money anyway, it just reminds me of what I want that I can't have!

My friend Jessie is also in town for a visit this weekend. She got in Thursday night and spent the night. We grew up down the street from each other, but didn't become friends until her sophomore year, and my freshman year in high school. Then, before Anna was born, she upped and moved to Seattle. It was sad, Mary was really attached to her. She comes and visits about once a year, it used to be more often but the longer she is gone, the less often she comes. We haven't taken any pictures with her yet, but we will get to that Sunday. We will meet up for lunch along with some other old highschool friends. McDonald's playland is were we are going for lunch, that way the kids can ply, and we can all catch up. I will try to remember to bring my camera along!

Monday Memories: Anna's diagnoses

Monday Memories: Did I ever tell you about The day Anna was diagnosed with Biliary Atresia These are not happy memories, but very much part of our life. I think I will continue each week as I look back on my memories of Anna's days with this disease, as well as her transplant before and after. I have never written it down, so now is the time! Anna's pediatrician called with Anna's blood test results. It was 7 o'clock in the evening on a Sunday night. I was very surprised to here from the doctor at this time of the night on a Sunday, because he told me to not expect a call until the mid afternoon on Monday. There was great concern in his voice. I remember him saying that Anna's bilirubin was still high (with this being the third blood test since she was born) At this point Anna was 7 weeks old. He wanted us to come in first thing in the morning so that he could give us a referral to a specialist. "There are a few options", he said. He gave us a few names, but highly recommended Dr. Whitington at Children's Memorial. On his referral paper I saw the words Biliary Atresia, and blocked bile ducts. I could still see the green lab order type paper. Holding it in my hand, clenching it very tight so that I didn't loose it for fear of going to Children's without it and them telling me to come back with a new order before the doctor would see me. I couldn't even pronounce the words Biliary Atresia. We got an apt. The very next day to see Dr. Whitington at Children's. Jason stressed the fact that he needed to get the day off of work to come with me, while I didn't think it would be necessary. How bad could it be? Some medicine to unblock her bile ducts and she would be fine! Jason was a lot more worried than I was. I always thought that he overreacted when Mary was sick or hurt, and this was what he was doing. I was glad to hear he was able to get the day off anyway, I don't like driving downtown by myself, I thought. We arranged for my neighbor to watch Mary that day since Jason's parents didn't live close to us at the time. As we drove down to the hospital I got to thinking a little more. This must be something that requires more than just medicine, or my pediatrician would have given it to me, right? I started feeling the knots in my stomach, I started to get nervous about what we would hear that day. We were called into a room not too long after arriving. First we saw Brian, one of the liver nurse/practitioners. He was great to talk to, and adored Anna. He asked too many questions, a lot that I couldn't answer. He asked questions about the color of her urine, her sleeping habits, her mood...but when he asked about the color of her stool, if it had been light, that's when I knew that they had an idea about what was going on with her. Then a couple more people came in and asked just about the same questions we had already answered. I was getting annoyed at that point, why do we have to answer the same questions over and over again? How many people have to touch her, feel on her belly before an actual doctor came in to talk to us? Finally, after 2 nurses and an intern, Dr. Whitington came in. A pleasant smile on his face was very reassuring to me. I thought all was well, we got all worked up over nothing. Then, he dropped the bomb on us. He told us he was sure it was Biliary Atresia, that if we ran into him anywhere else he would have stopped us. He proceeded to tell us about this disease, and what would come to follow. He explained the Kasai procedure to us, and drew a diagram of what they would do in this surgery. He told us that this procedure doesn't always work, and that she would eventually need a liver transplant. Before any of this Anna was to be admitted to the hospital for a biopsy to confirm his suspicion. It didn't all click with me right away. When the doctor left the room I looked at Jason and saw the fear in his eyes, then we both cried. Brian walked into the room to let us know that our bed would take a couple of hours. We had the option to stay and wait for a bed, or to go home to gather some things, and come back later that day. He must have seen parents like us before because it didn't seem to faze him that we were upset. We told him we needed a minute to talk. He understood. After he left Jason and I pulled ourselves together and talked about what we should do. We then remembered that Mary was with my neighbor, but couldn't stay there for a couple nights, or however long we would be at the hospital for. We needed to go home and gather some things for all of us, make some phone calls for Mary's school and Jason's work. We had to ask Jason's parents to watch Mary for us, and for, we didn't know how long. As we walked into the lobby on our way out of the hospital at Children's, Jason decided that he had better call work to let them know he wouldn't be there for the rest of today. As he was talking on the phone all terry eyed, I was sitting in the lobby, terry eyed, worried about every one looking at me. I have never liked people seeing me cry. Again, I thought, this place must see a lot of this. The car ride home was very silent, as we were in shock from what we had just had to take in. I sat in the back seat holding Anna's hand, as Jason drove. She was sleeping, and she seemed fine. Was she really as sick as the doctors think? She looked so peaceful, and beautiful. As we came closer to home, I started to worry about what we were going to tell Mary. At the time she was only 4 years old. How do we explain this to a 4 year old when we didn't even understand it ourselves? How would she react? How would we tell her that her new baby sister and Mommy and Daddy would be torn away from her, but we didn't know for how long. That she wouldn't be able to go to school because she had to stay at her grandparents house. This was going to be hard. As we pulled up to the house Mary was playing outside with some neighbors. So pretty with her long thick hair, she looked so happy and we were about to chatter her perfect world. We brought her upstairs after a brief explanation of the situation to our neighbors. All we told her was that her baby sister was sick, and she had to go to the hospital for a little while. She was very grown up about the whole thing, I know she wasn't happy about having to miss school, but she loved to go visit her Gama and Papa! Of course, we didn't have to worry about my in-laws saying no to watching Mary, they were always ready and whiling, but we did have to explain the situation with them as well. They had a lot of questions that we couldn't answer because we didn't know the answers. Luckily, Brian gave us a some pamphlets to hand out and those came in handy. When we arrived at Jason's parents house with Mary and Anna, we couldn't stay long, we had to get Anna back to the hospital. We let Gama, who was the only on home at the time, read the pamphlet. Her face turned white, she cried, gave us hugs and kissed and held Anna for a little bit before we went on our way. Then, we were on our way..... Here are a couple pictures of Anna before she was diagnosed: To be continued, next week....Anna's admittance, and biopsy. Links to other Monday Memories Running 2ks Allison Shelli Rowan If you participate, leave your link in the comments and I'll post it below)

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Yes, I Am One Of Those Parents!

Last night we went to see "The Chronicles of Narnia: The Lion, the Witch and the Wardrobe" I just had to get out of the house, I felt cooped up and just had to get out and do something. At 7:30 in the evening mentioned the way I felt to Jason and asked him if maybe he felt the same. He said he did, but wondered what we would do at that time of the night, and we had already had dinner, so going out to eat was out of question. Ever since Narnia came out Mary has been dropping hints to go see it, so I brought that up. I think Jason is one of the only people that hasn't read the book. He didn't understand what all the fuss was about, but I promised him it would be good. The only thing that held us back was the next show time didn't start until 9:00, and we had no one to watch the baby. Jason's parents would have watched her in a second, but they were out at a company "Holiday party" (a little late, you think?) So....did I want to be one of those annoying parents that brought the fussy crying baby to the theater? After discussing it for a while, Jason and I decided that we should just go ahead and go. It's not like the girls had anything to do today, they could sleep in late after being up till midnight (long movie), and Alex is always so good wherever we go, I didn't think she would make too much noise and figured that it would be about bed time when we got to the theater and she would pass out soon after the movie started. It turned out to work out fine. We got there and Alex was oooing, and awwwing about everything. She thought it was pretty cool! We got our seats, then Jason Mary and Anna went to get goodies (note to self, offer to do that job next time) They came back with popcorn, pretzel bites, 2 large pops, and two boxes of candy! I wanted so bad to holler at Jason, but he is such a softey when it comes to what the girls want, and he doesn't mind eating it either! We were having such a good time, I didn't want to spoil anything. They came back just as the movie started, I guess the lines at the concession stand were long. Besides a couple of outbursts from Alex, she was good! She sat with us, ate popcorn, and even had a few sips of pop. One time she started chanting DaDa, but I think she just needed to hear her own voice. Since she was talking over the loud speakers, she was being loud. The people if front of me glared in our direction, but she stopped almost as soon as she started so they didn't get too mad. A little while later she started to get sleepy, but tried to fight it, she didn't want to miss a thing! It wasn't long after that when she finally drifted off to her own land of Narnia! That was probably only half an hour after the movie started, and she was out for the rest of the time. It was great! Mary and Anna even stayed awake for the whole thing! When we went to see "Harry Potter and the Goblet of Fire", she fell asleep half way through. It was probably all the candy and pop this time around! Mary has always been good at staying up, even better than me! Narnia was a great movie, we all enjoyed it. The outing with all three of them was fun, and turned out ok! I might even do it again some day. I do know that the next time I go to the theatre and there is a fussy baby, or loud kid, I won't think twice. Sometimes you gotta just do it.

Anna's turn to be the big sister!

When I found out I was pregnant with Alexandria I was shocked, not only were we not planning another baby but I was on the pill! I thought maybe this would be our boy. Jason and I knew we would have another baby, but not this soon. I only wanted one more, and wanted it to be a boy so that I could be done having baby's and concentrate on the three. Well, we all know how that turned out. So, now I have three girls and a dream of having a boy some time in the future. Jason is an only child and this would be the last chance to carry on his name. As for me, I just want a boy! For right now there is no plan for another anytime soon, but that doesn't mean God has a different plan for us! Alexandria is the sweetest baby, and I wouldn't trade her in for anything in the world, not even a boy! She has THE cutest personality for a 9 month old. She already says HI, she also tries to say Anna but calls almost everyone else Da Da. When she sees something interesting she will say oohhh, or DA? (like, what the heck is that?). She has been crawling for two months now, but now that she has it down and she is a speed crawler. She pulls herself up on furniture and has been doing that for about a month and a half. She cruises along furniture, and has four teeth. She won't touch baby food anymore, except for the cereal and fruit. She is growing up too fast!

Before Alexandria was born, I was worried. Anna has been the center of everyone's attention for almost four year at that time, I thought she was going to be jealous of the new baby because she wouldn't be the center of the universe anymore. 9 months have gone by since Alex was born and not one sign of jealousy from Anna. I have to say that I am still shocked. Anna loves her baby sister. It reminds me so much of how Mary was towards Anna when Anna was born. Now that Alex is getting older, Anna is able to do more with her. If Anna has to take a bath, she wants Alex in there with her. When it is Alexandria's turn, Anna has to be in there with her no matter what. Anna taught Alex how to splash, and I mean splash big. The bathroom floor is always really wet after their bath. I took some pictures of them in the tub together the other day. Anna and Alex remind me so much of how Mary and Anna were. There are some things that Anna can't do, like change a diaper, spoon feed baby food and carry her around like Mary does. That really frustrates Anna. She wants to be able to do what Mary does. I have also noticed that some things Anna does, or says to Alex are the same things Mary did with Anna. Mary is passing down her good big sister skills for Anna to use with Alex. Alexandria is a very lucky baby, she has both of her big sisters to show her love and attention. She could never be board. I love the way she looks at them, with such love in her eyes, and envy. It warms my heart. I pray that they will be close as they grow older. Out of the five sister that I have, I am only close to two of them. It's sad really, but I guess if I think about it there is a 25 year gap between the oldest sister and the youngest sister, not to mention the five boys scattered around in the mix of us, with me the third from the youngest. When I was born my two oldest sisters were not living in my parents house anymore. So what's my point, I guess I kind of went off the subject, but I just hope that they are always this close:
Alexandria and Anna having a blast splashing in the tub!




Mary feeding Alexandria her morning cereal.



Just hanging out!

The Talk

Well, things are back to normal after the Holidays. Mary and Anna both went back to yesterday. In the past Mary couldn't wait to start school no matter if it was after Summer, after Christmas break, or even just the weekend. I knew that would change sooner or later, but my fingers were crossed for later. It's not like I had to drag her out of bed or anything, but the excitement was gone. Anna, on the other hand, was very happy to go back to school. Since she only goes two days a week, it's like a treat for her, like how it was for Mary. Preschool is like that, it's fun and you get snack time, and play time, and everything is a game, even when it's learning. Kindergarten is pretty much the same only you go everyday for a half day and everyone is your friend. First grade was the coolest for Mary, she was no longer in the youngest class, you stay at school for the whole day, and what is cooler then getting to eat your lunch in school? This year Mary realizes the work that she has to do could be challenging, eating in the lunch room really isn't that cool when you have to rush, and friends start forming groups that may or may not include you. Mary came home yesterday in an awful mood, giving me attitude, yelling at Anna for looking at her, and just not acting lik my Mary. I knew something was up. When I told her that she better shape up, and there was no reason for the way she was treating her sister and I, she fessed up. I guess a group of her "friends" were talking about her behind her back, and wouldn't play with her at recess because she was weird and stupid. I asked Mary if she heard the girls saying these things, and she said no, another friend of hers told her that she heard them talking about Mary and relayed it back to Mary. I was at a lose for words, I didn't know what to say to my crying eight year old daughter, who's heart was broken into pieces. So, the best I could do was hug her and told her that everything will turn out ok. I told her that it happens when your young, one minute you are friends, the next your not, and then the next you are again. I told her that when she goes to school tomorrow she should talk to her so called friends and ask them about what her other friend said they said, and that it could all be one big misunderstanding because these things happen. Turns out, they are the best of friends today. I didn't' want to butt in too much, so I didn't ask details. She did say she questioned them and "it WAS a misunderstanding, just like you said Mommy!" We'll see what tomorrow holds.

Talk #2, my and Anna's drive to preschool. Out of the blue Anna asked me if she was going to die. I told her that everybody dies someday, but that she wouldn't until she was old. (what was I supposed to say, that it could happen any day to anyone?) Then she asked: "so Gama will die soon?" Oh my, now what was I supposed to say to that? I told her: "no, Gama still has a lot of life in her, but yes, someday Gama will die." Then she said something that broke my heart, "when I was a baby I almost died." Not a question this time, a fact. "Yes Anna, you could have died, but you didn't and now your very healthy and have a long life ahead of you." Anna: "I didn't die because I got a new liver that wasn't yucky, and you gave it to me?" Now, with tears in my eyes: "That's right Anna."

"Thank you Mommy"

No, thank you Anna, for the sweetest thank you I have ever heard. When Anna had just had her transplant, I remember trying to imagine this day. It's not like I needed a thank you, but I can't tell you how good it made me feel.